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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)
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@ashley302

Thank you for sharing. Yeah the hardest part I feel like is accepting it.

As far as early stages how can there be nerve regeneration? I understand if you find the root cause then there's a possibility for recovering and correcting the problem.

Is your type of neuropathy idiopathic or did you get any reverse in your symptoms?

Definitely support will be helpful because it's hard to cope with this condition and not having people that can relate to you.

Thanks for much Rachel.

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Replies to "Thank you for sharing. Yeah the hardest part I feel like is accepting it. As far..."
Rachel, Volunteer Mentor | @rwinney | Oct 1, 2019

Ah yes, I'm sorry, you said you were idiopathic. And you mentioned 2 years...is that how long ago you were diagnosed?

I have had b12 deficiency and unfortunately do not believe it was found early enough for nerve regeneration. I feel Drs sometimes want to keep a window of hope open.

Truth is there is no sure bet with SFN.

Keeping hope alive for slowing progression and comfort each day.

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iceblue | @iceblue | Oct 1, 2019

Hi Ashley - I was only diagnosed 2 weeks ago - and only joined this forum a few days ago 🙂 I am honestly heartbroken to hear that you have been diagnosed with this at such a young age. I am in my early 60's and don't fuss about the underlying cause because my Neurologist said it's quite common in older people.

You said you don't want to take any drugs, and that makes me wonder how you deal with the pain. I finally went to my doctor because the pain had started to wake me up in the middle of the night (every night) and I could not get back to sleep until the pain meds I kept on my bedside table kicked in; and that doesn't even mention the daytime pain - which at times is all-consuming. Perhaps you are not there yet?

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jeffrapp | @jeffrapp | Oct 2, 2019

Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

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